1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Dementia not treated as a terminal illness

Discussion in 'I care for a person with dementia' started by Tiddlywink, Dec 1, 2014.

  1. Tiddlywink

    Tiddlywink Registered User

    Feb 26, 2014
    17
    Manchester
    I have been reading a news article that dementia is not being treated as a terminal illness by the medical profession. I have been my mum's sole carer for over three years now and although she is 85 years of age, none of our GP'S are the slightest bit interested in her dementia. Whenever I take her to see a doctor or nurse, they never even mention it and don't even ask how she is.. They will not discuss it with me unless she is in the same room, and although she has Alzheimer's, she is not deaf or stupid and it is like discussing someone behind their back. If, god forbid, she was suffering with terminal cancer they would be all over her like a rash. I know there is nothing they can do to make the dementia go away, but it would just help greatly if people stopped pussy-footing around the subject and acknowledge that she has Alzheimer's. I thought that attitudes to mental disability had changed, but it seems that the medical profession are the last ones to accept that dementia sufferers and carers need to talk about it openly and not hide it away in some sort of mental cupboard.
     
  2. Roma

    Roma Registered User

    Jan 15, 2008
    122
    UK
    You are so right Tiddlywink

    I was just watching Loose Women (my guilty pleasure sometimes) and they were saying that Marie Curie were saying that it is wrong that Alzheimers isn't treated as a terminal illness and patients need the same level of care especially at the end of life stage. I wish the medical profession would recognise that it is a physical illness of the brain and at the end stage the patient is unable to drink or eat and the shutting down of the brain is what kills a person with Alzheimers.

    It just irritates me that once the person has the diagnosis then the family are left to cope with no real help at all.

    My father died of cancer 20 years ago and we had lots of help and support, but my poor mum went right through to the end stage of Alzheimers and I felt didn't get the end of life support that she deserved, especially when it came to pain relief, although she did get a patch in her last few days, and then it was only when I asked for it and not routinely given.

    Lets hope things change in the future.

    Roma
     
  3. marionq

    marionq Registered User

    Apr 24, 2013
    5,751
    Female
    Scotland
    Pressures of elderly care

    John had a GP appointment this morning and it was with a new member of the practice. All four doctors have been excellent but when it comes to practical help other than medication their hands are tied by the social work department. He has a referral for day centre but the waiting list is long and can only be accessed after a carers assessment. I had one done a year ago but the situation has moved on considerably since then and we need a new assessment due this month. Meanwhile I am buckling at the knees as his needs and those of his 79 year old sister grow - I am 70.

    How on earth do the elderly living with dementia on their own manage? My husband would be a lost soul.
     
  4. thats life

    thats life Registered User

    Jan 2, 2013
    98
    Northumberland
    I could not agree more, dementia is still being treated as a social illness, when in fact no one recovers from it, it is a terminal illness, my father also died of cancer and the support he and myself received was brilliant, not so when it came to my mother diagnosed with Alzheimer's, I struggled to care for her alone, despite begging for help from GP and social services, I finally reached carer breakdown before getting help,
     
  5. Tiddlywink

    Tiddlywink Registered User

    Feb 26, 2014
    17
    Manchester
    P



    I have carers assessments, but they are a bit of a waste of time. They only want you to help yourself and if you say you don't want to go to a group meeting or a day centre, you are made to feel ungrateful. The meetings are always at lunchtimes, just when I have to give my mum her lunch as she is also diabetic. It would take me the best part of an hour on the bus. My mum doesn't want to go to a day centre as she has never been much of a social creature and she finds it difficult to hold a conversation anyway.

    Has anyone had experience of Admiral Nurses?
     
  6. Jilly1

    Jilly1 Registered User

    Jul 22, 2013
    54
    Nottinghamshire
    Oh how I agree! We have an appointment with the consultant tomorrow who will do the same 'test' and check that Geoff's still ok on the Galantamine and then sign us off. That's it then, no one to care whether we live or die. No medical input and should we dare to need to make an appointment to see our doctor a 3 week wait!
    Good luck to you
     
  7. jeany123

    jeany123 Registered User

    Mar 24, 2012
    19,049
    Durham
  8. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    4,999
    UK
    I had coffee with a nurse friend. She is not involved in dementia care but has statutory training each year. I discussed the Marie Curie comments with her. She told me that until my mum became ill with AD she had no idea it involved more than getting a bit forgetful and had been working for 30 years. What the heck are they teaching them?
     
  9. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Isn't it absurd how you can only get a diagnosis from a consultant but then it is treated as a social disease. It is absurd and completely wrong. If the diagnosis can only be given my a medic then the illness is undoubtedly and undeniably medical
     
  10. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    4,999
    UK

    I totally agree. Would any Dr tell a person they had cancer and then add that SS will be around in the next 6 -12 months to assess their needs?
     
  11. Tiddlywink

    Tiddlywink Registered User

    Feb 26, 2014
    17
    Manchester


    Exactly. It took me nearly a year to get a walk-in shower put in for my mum and that was only because I threw a fit on the phone after SS said she would just have to carry on having a wash down at the sink. I have just applied for a wheelchair for her. Hope she gets it before she loses the ability to walk completely.
     
  12. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    4,999
    UK
    We were refused a wheelchair as Mum couldn't walk. Apparently if she could walk a few steps and needed it only sometimes she would have got one. You couldn't make this rubbish up!
     
  13. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,042
    But if they can convince themselves that it's a 'mental' illness and all in the mind then it is 'social' , I know what I have is killing me and it's not my mind but attitude to this illness by the medics does not help my state of mind one bit:(, that is actually OK :) when not under onslaught from the pathophysiology of this wretched disease.
     
  14. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,060
    Toronto, Canada
    I have to say I get quite upset when people refer to dementia as a mental illness. In all the various dementias that I know about, the brain is being physically damaged by the disease. This makes it a physical disease. The fact that the first symptoms manifest as memory and behavioural issues doesn't change this.

    To be fair about mental illness, they are finding more and more physical causes as research goes on. I am not trying to denigrate anyone with a mental illness but when the damage to the brain can be shown by a scan, I get infuriated when people say it's a 'mental' illness. Saying it's a mental illness implies a possibility for a cure or at least achieving an equilibrium.

    One week after my mother was diagnosed, I went to an Alzheimer symposium. The first speaker said "Alzheimer's disease is a terminal disease". He didn't sugarcoat it whatsoever.
     
  15. Liz57

    Liz57 Registered User

    Dec 22, 2013
    184
    It's not just the GP. When I eventually got the memory service to visit mum after 8 months of silence, they told me they only see patients who aren't on medication once a year or "more frequently if they require additional services". I asked how they'd know whether my 87 year old mum needed "additional services" if they weren't seeing her. They looked at me as if I was stupid, changed the subject by asking her whether she was sleeping OK. After five phone calls between 1am and 4am, she replied that she slept like a log. It was noted on a pad and they left.

    I dispair!
     
  16. Isabella

    Isabella Registered User

    Jan 4, 2014
    106
    I was just thinking about this myself, in terms of the level of empathy and understanding I get from others. If I told people my mum was dying of cancer they'd be quick to comfort me. No-one seems to realise my mum is dying. Really, dementia is more deadly than cancer, because once you have it the only way you won't die from it is if something else gets you first. It's quite shocking how little this disease is understood.
     
  17. Emomam

    Emomam Registered User

    Nov 13, 2014
    116
    Yorkshire
    I went to the memory clinic twice with mum and when we refused to medication they signed us off and we never went again. When I needed sleeping tablets for mum from the go he wanted to refer us back to the memory clinic because he wasn't sure what to prescribe.

    Needless to say we didn't go and turned to lavender oil on her pillow which seemed to work.

    I do think that it is pure ignorance or lack of training and like another member said on tp they should be made to read these posts. Maybe the enormity of the problem might actually hit them then.


    Sent from my iPhone using Talking Point
     
  18. dumpygirl

    dumpygirl Registered User

    Nov 20, 2013
    115
    derbyshire
  19. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,294
    Cotswolds
    We had a similar experience....I think you posted on that thread too. We were told at the memory clinic that mum has vascular dementia, with the the likelihood of 'catastrophic events'.....then given no support, no meds and an appointment for a year's time! As someone said, it's like they're just ticking boxes, pleasant as the individuals may be.....
     
  20. edwardbs

    edwardbs Registered User

    Jul 30, 2014
    19
    Lichfield Staffs
    to make the dr interested

    my oh died very slowly of heart failure i had to insist that the doctor came to see him when he was dead. if you have the wrong thing you dont count i have vacsular dementia and am 61 what waits for me? it will not kill me in 6 mths not terminal. just take more of my mind till i kill myself by getting my drugs wrong. it is a waste and frustrating Can we both punch a doctor? How about a sponsored thumb a doctor week? not really but it would make us feel better just planning it D|ONT D|O |IT but i know how you feel
    we are unreasonable if we get in the sligtest angry or even disagree with the doctors
    no it is not just you
    I work the system and use my doctorate when i go into hospital as they treat me differently and that is wrong
    I do take some pills that are very dangerous and very common that is scarey
    doctors only want to make us better the rest are parked in a cupboard.
    Edward
     

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